Hydrocephalus: My Hydro diagnosis becomes a teenager…

Published on May 4, 2020

13 years ago, today, my world changed. A “simple” visit to a Neurologist to find out what was causing my daily headaches, and subsequent CT scan, dropped a new word into my vocabulary. She was the first one to believe that there wasn’t anything sinister going on, that I was probably dealing with Migraines, or something a pill could cure. Highly confident, she agreed to send me for a CT “just in case”. (So ironic as her approach and attitude, laid the scene for what was to follow, years later). The headaches, which started after the first instance of viral meningitis at the age of 15, had worsened when I had it again, 7 years later. Something which normally gets a response of: “So you had it twice…viral meningitis? How interesting…”, from doctors during a consultation and medical history update.

I lived with them for approximately 14 years without intervention!

You don’t always expect bad news in terms of a diagnosis. (Unless you’re paranoid like me, then you do. Disclaimer: paranoia intensified post this diagnosis and with good reason, warranted or not, who’s to say?). You know something’s not quite right but you’re not entirely sure what. You kind of anticipate hearing something negative but, you don’t expect the sky to come falling down or the earth to swallow you hole.

But, that’s life, right!

Sometimes, we have those moments; the ones we least expect, the ones which make us take a minute to step back and re-evaluate so much. The moments where your breath is taken away by the “possibilities” brought on by the news, and the uncertainty, unnerving you to no end. Moments which wipe out the life you’ve known, for as long as you can remember, in the blink of an eye.

We all have them, the degree just varies and the way we choose to react, handle it or deal with the hand we’re dealt, is nothing anyone can (or should) prescribe to you.

I remember the day as if it were yesterday. (There are so many other moments since then that I wish I had such a clear view of in my mind’s eye…wiped out by multiple brain surgeries, never to be spoken of again).

Oh well!

I waited for the results from the CT scan I just had and rushed to work, having gone to the hospital on my way there. Sitting in my office, I closed the door behind me to read the report. The word Hydrocephalus jumped out at me from the “Findings” section and a desperate Google search ensued. I sat there, dumfounded, heart racing and unable to swallow because my mouth was dry. I called the Neurologists office, and after speaking with her, she said that she would do a referral to a Neurosurgeon and I would probably need to undergo a few more tests. Brain surgery to insert a shunt, was a possible treatment option on offer. Needless to say, unable to concentrate on work, my whole world had shifted as so many thoughts ran through my head.

In hindsight, to say the road since then has been easy, that I probably had nothing to worry about and that what I had conjured up in my mind (expecting the worst), would be a slap in my own face. I don’t do self-harm so; you’re not going to hear me say any of that.

Hindsight is a wonderful thing. If only I could go back to that time and sit myself down…

I have grown wiser though. I’ve even grown an extra layer of skin (a few in fact). The outward exterior does not resemble what’s going on inside of me, the scars left behind (physical or otherwise), or the remnants of the fights I’ve had to undertake. I’m not as trusting of medical personnel and accepting of everything they tell me. I do my research. I own my medical care and take a serious interest in what happens next. I’ve matured at the hands of this condition and have been forced to “grow up before my time”. (Something, unfortunately, I know all too well, how to do). Some days have been hard, some have been easy going but mostly, it’s been an uphill battle just to be heard and taken seriously. Lord knows, I’ve lost the plot many times, stumbled, fell into deep depressive states at the helpless feeling which ebbs and flows. Yet, I’ve stood my ground and clawed my way out to face another day. When it comes to this condition, I’m not always right, I get so much wrong and there’s plenty more for me to learn and understand. I don’t for one moment think Hydro is done with me but for all intents and purposes, this symbiotic relationship, is what it is.

13 years later and I’m still here. 5 operations are all I’ve had, in comparison to others who have had so many more. It’s not a competition, it’s not a race to the end. If anything, it’s a survival game you face, cruel and sinister with so many unknowns and challenges. If I had to find one thing I’m grateful for in all of this, it would probably be the connections I’ve made with others. Through this blog, with those who choose to read it.

Watching a movie earlier today, one of the actors said: “God gives us all a voice, it’s up to us whether we use it or not”. It gave me pause…

I’ve learnt that family aren’t always blood relatives (Lord knows, some of them are questionable in any case and probably don’t deserve to be called that or be part of your life to begin with, despite sharing a bloodline). But, the connections I’ve made, are ones I treasure because they certainly make this road a little less lonely and scary.

Being the mother of 2 teenagers and a 10-year-old (who makes me feel like she’s hit the teens already!), I have a pretty good idea of this next phase of life. The eldest taught me all about being moody, rebellious and a downright pain in the backside, he’s a bit better now but with that comes other challenges. Parenting is a learning curve…daily!

Just like my condition though, there’s no hiding from any of it. You have to take it as it comes and deal with every turn as best you can. I’m not the first parent going through unknown territory of emotions i.e. disappointment, joys and challenges with my children, and I sure won’t be the last. Similarly, I’m not the only person on this earth living with the effects of Hydrocephalus. It’s not as uncommon as people think!

I often wonder what would have happened if I didn’t go see that Neurologist, 13 years ago. What if I had left the daily headaches and accepted them as my norm, what would my life have been like?

I suppose I would never have found my voice or use it in the way that I am. Funny that!

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Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease. As much as these experiences are unique to me and my family, I’m sure others have experienced it too. My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!